Stonebird

HOW TO BE ASSERTIVE IN ARTICULATING YOUR NEEDS. Linda faces major medical challenges this year, it is incredibly difficult working out how to convey her complex issues and needs to professionals so that they comprehend what she needs to keep her safe. It is so important that we do this, for the terrifying consequences, if they get anything, I stress “anything at all”, wrong are potentially life threatening or will trigger unimaginable suffering and deterioration.. We have to find some way to articulate what, let’s face it, is beyond incomprehensible to most people. I know we have done it before and we will do it again, only this time the stakes are much, much higher. This is bigger than anything we have ever faced. There is zero room for misunderstanding ahead, so it’s really serious. Day and night all of this is constantly on my mind. The stress, right now, is huge. Anyway, I was listening to the “Today” program this morning on Radio 4 and they had an airline executive on. He said som...

Here is a new song. It’s up best music with very powerful moving video about living in broken spaces. Words and music by Greg. https://www.youtube.com/watch?v=X4hBMpbvDdg&feature=youtu.be

  YOU CAN It strikes me how there is no word to describe the many, like my wife, who have been ill and disabled for decades, 20, 30 years and more. What word could possibly expresses the death and breath of their suffering, their catastrophic losses, the appalling devastation of their life? A term like the “long term sick” is a hopelessly inadequate representation of the dire situation they are in. Add to that the extra burden many are forced to endure of being saddled for years with a vague diagnosis that has no boundary to safely define it, nor accurate physiological explanation or respect and you have “absent citizens” thousands, maybe millions strong, who knows, hidden in plain sight, thoroughly invisible. There is much awareness these days about the power of stereotypes reinforcing biased beliefs. What stereotypes, what biases, do terms like the “long term sick”, the “long term disabled”, the “bed bound”, the “house bound” conjure up about people?  What about the life wre...

We are deeply moved to see this video of Channel 4 news interviewing Merryn Croft’s Mum about the true reality of severe ME. https://www.youtube.com/watch?app=desktop&v=pobf0RPlJuw&fbclid=IwAR1RsCDMhiCK3ephcQvVIilyXqC11bDtKPL04JyCYhjB_bZAV5VU2kihrmg We are reminded how important it is to get accurate information out into the world about this devastating illness that destroys lives. Here is a review and links to Gregs free booklet on the shocking history of ME and the psychiatric misdirection of a physical disease. https://www.positivehealth.com/review/strait-jacketed-by-empty-air?fbclid=IwAR3yHdxeb9NYnS12GBnV7seZR3q1doDZNp2ejmBjyy4vhNYd6cP2CxKjgmY

  WHAT IT TAKES This getting older…. I could barely walk after cycling yesterday, my right leg seemed to be in permanent cramp all day. It made for an uncomfortable night. However it’s okay, I think so anyway, this morning. Thank God. For the impact upon us, me not able to easily do what I normally do, was quite devastating. We tread a very fine line here. Little do people know what it takes. Sometimes I watch those videos that urban climbers post on YouTube of themselves scaling up the side of skyscrapers, hanging only by their fingers and toes, hundreds of feet high, on flimsy looking window frames. It’s even worse when they release one hand to make a phone call, or remove a shirt. There’s a polish climber, Marcin Banot, who talks you through his process as he climbs for charity, in particular, the courage, the focus, the discipline and the terrific attention to breathing required. Well, my hopes of ever doing that are far behind me now, as yesterday shows. In any case, Linda w...

  RESILIENCE Holding on to something good and clawing your way towards it. That’s how Linda described resilience yesterday, struggling in bed, in immense agony, when I asked her. She spoke about the destruction of illness….but still building a life for yourself. I wish I could remember all she said. I did make a note of this though: “Seek in yourself until you find it, you can’t just pull yourself together. You have to find your own innate well spring of goodness, love, something that will keep you going against all the odds.” I write this because that much loved, ancient symbol of resilience, the daffodil, is flowering, right now in our garden. I am a hungry man, all this harrowing winter I have been longing for its appearance. I wonder how others would describe “resilience “ in the face of long term, chronic, severe illness and disability? Surely not in terms of “well, pull yourself together, change your thoughts and just get on with it, won’t you?”, which is probably how the ...